Thursday, August 18, 2011

Birthday party and then some respite!

Many of you know that Anaya is turning two next week!  This is an incredible and miraculous event.  Baby Anaya's Birthday Bash is happening on Friday the 26th here in Nelson BC at Lakeside park.  The whole city is invited.

It's a big deal.  We were told not to expect her to live that long.  She has outlived the average age of death of a Krabbe baby by almost a year.  For the last three weeks she has been battling pneumonia and today I can say with confidence that I believe she has overcome it!!  She still has a bit of a runny nose but is getting stronger every day.  Her lungs are stronger, her breath is coming easier.  She hasn't had any prolonged apnea episodes.  She is struggling still with increased seizure activity.  Her little arms and legs twitch and she's having muscle spasms.  She needs to go to see the Palliative Care team and the metabolic specialists for help with these developments.

After the big event next Friday we are going to take her down to Canuck Place Hospice in Vancouver for some respite *not end of life care** and to get the medical help she requires.  No longer having nursing in our home has been an interesting and draining experience at the same time. In order to facilitate our whole family being able to be with Anaya near the hospice, my grandparents have arranged to let us use their motor home for an extended period.  The temperate climate of the coast will be easier on Anaya. Travelling with her in a vehicle is so difficult.  She has so many items and machines that she has need of on a moment to moment basis.  Having the motor home for a transfer vehicle and as a place to stay while we are down there is essential. My uncle brought it to our house the day before yesterday and dropped it off.  I'm quite excited about it.  It's an old 1987 Ford Vanguard.  The interior is so 80's that it can't help but make me smile.  Pink Carpet, floral wallpaper, baby blue seating.  The main part is that it runs and everything works.  It has a generator to provide electricity for the oxygen and suction machines.   We don't know how long we will need to be there for, and so we are bringing "Home" with us!

 I am so incredibly grateful to Albert and Vivian Medland for their motor home!  We love you grandpa and grandma!

With the help of Anaya's supporters and The Anaya Initiative, we hope to stop in and talk to a few groups about Newborn screening for treatable diseases like Krabbe and also speak to children in schools about Children with disabilities.  I had a dream that I was going from school to school with Anaya and speaking to assemblies about how people with disabilities have their own purpose too!  That it is OK to stop and talk and communicate with the disabled and to be inclusive of them.

I feel as though this dream was a message from God and the Universe telling me what path we are meant to take from this point forward.  As Anaya continues to get better I am going to start working on finding people / groups / schools who would be interested in having us speak.  We want to raise awareness about this disease so that one day every baby born with Krabbe will get the opportunity for a longer, higher quality life!

I want all of you to know how much your help is appreciated.  We now have 85 subscribers to the blog raising $842. a month for us to take care of Anaya.  All other donations are going into Anaya's account for her care and medical needs.  I will continue to write as often as possible about Anaya, giving the best I can to you, our readers. You are our Angels.  I am also planning on writing a half truth/part fiction story with Anaya as a central character.  You'll be the first to read the first chapter :)


  1. I drove past your place today and saw the big beast in your driveway today!!! From our conversation last week I knew what it was here for and it made me smile. Good luck on your new adventure! We will all be with you in spirit. As I have told you in the past, I will sadly be missing Anaya's second birthday bash - I will be up in the mountains and will toast Anaya from the highest peek I can get to. xoxox Little One!!!!! I love you !!!! Way to go little trooper!!!
    xox Lisa

  2. Camara, I´m so glad to hear this news. I live in São Paulo Brasil and I contributet this week with CAD $ 300,00 after receiving your e-mail. Please continue this lovely mission, I promisse that I will keep contributing. Sorry for my bad english..Love you girls!
    Adriana de Souza

  3. This plan/dream/adventure makes my heart happy... I am so excited for you guys. I feel right down to my TOES that you are doing the right thing. Love love love LOVE!! :)

  4. I am so excited for you guys! Hopefully we can connect when you are down here. I was just thinking the other day about what great services I have access to here in Richmond and wishing that you could have them too! My daughter is going to be attending a support group for siblings of special children. If Solara is coming with you perhaps our girls could spend some time together.


  5. It is amazing how well Anaya has done and to reach her 2nd birthday is truly miraculous.I wish Anaya a very happy birthday and wish her family well.I hope Anaya will reach many more milestones if it's at all possible and hope through God a miracle for her somehow somewhere.Cherish all the time you have with Anyaya and comtinue to keep making memorues with her.You will have something to cherish someday down the road.God bless and take care.Molly.

  6. wish I lived closer to be able to attend the party!! YEAH ANAYA!!! Have a super happy birthday princess!! Love from all of us down on our end...Windsor, ON.

  7. That is fantastic!!! Happy Birthday sweetie!

  8. $842 a month so far! That is fantastic! I'm sure that will make things a little easier, for sure! And people keep subscribing each day so I think it's just going to keep going up and up :)

    I LOVE THE MOTORHOME!! It's awesome, you guys will rock the 80's vibe! And the rainbow windsock on the front is great. I wonder if anyone knows anyone who makes vehicle decals that magnetically stick to the side - maybe they can make you a huge rainbow with Anaya's name on it - what a great way to spread the word.

    I'm thrilled that Anaya is feeling better - runny nose and all! And the news of going to Canuck House is fantastic. It will be wonderful for all of you.

    Stay well. Love those girls of yours for me. Hugs for you and Brent. XO

  9. This is such wonderful news :) Anaya is so beautiful and strong! I hope she has a very special birthday!

  10. I'm so glad for this happy news. YAY ANAYA!!! :)

  11. I think what that 80's ride needs is "I <3 Anaya"!

  12. I'm sorry I live too far away to attend Anaya's birthday bash, but I wish her an amazing birthday. Stay strong little princess!


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